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shucks wrote:Would there be any place outside of chicago to get the MIST protocol? The couple people who i've talked to who have had it done recovered pretty quickly as compared to the BEAM. I am just wondering if somewhere gave dr burt's protocol other than the clinical trial.
Good luck ASHER and please keep us posted.
I "beleive" you can get it here with Prof. Shimon Slavin at CTCI in Tel Aviv:
I am writing this to answer an e-mail that I received yesterday. In the stated mail the person with MS asked me about my experience with the HSCT I had in Israel in late 2006-early 2007, and with his consent I decided to publicly answer his questions.
I had the non-myeloablative HSCT at Hadassah hospital in Jerusalem, so I cannot say anything about the procedure in CTCI center in Tel Aviv. As far as I understand, such a procedure no longer can be done at Hadassah outside the clinical trial (at least that’s what Steffi wrote on this forum)– I do not know the exact reason why is this so, but I am almost certain that it is because Prof. Slavin no longer works at Hadassah, now he works in CTCI in Tel Aviv. In one of my previous posts on this forum I said something about the level of education and skills that Prof. Slavin has, and I also mentioned that the price of the procedure at Hadassah was 77.000$. I do not know what is the cost of the procedure in Tel Aviv.
In his blog and on this forum George Goss already gave lot’s of information about the main differences between the myeloablative and non-myeloablative HSCT, in addition I can say I like to use the phrase “smarter rather than stronger” to describe in general the difference between those two approaches. The reason why I choose non-myeloablative procedure was because I witnessed some unpleasant experiences with myeloablative procedure, but on the other hand, in those times the procedure was performed in a more brutal manner than the one George experienced.
In fact, my experience was not so hard except on some occasions, for example I remember that cyclophosphamide was very unpleasant. Most of my problems appeared 1-1,5 years after the procedure, I had an intense herpes zoster and a nasty urinary infection, but everything turned out well in the end.
Now, 4,5 years after the procedure my EDSS improved by 2 points (I was 6.5 before the procedure), though it is hard to asses my real EDSS because my leg is 3cm shorter due to the nasty fracture (a completely healthy individual with a leg that is 3cm shorter limps, imagine how is it to walk for somebody who has balance problems), so I walk longer distances with crutches – I can walk more than a mile without stopping. But in some areas I experienced almost incredible improvement, for example I am continually improving my strength – can do up to 1000 push-ups per day, can swim one hour with only occasional small breaks. And of course, ever since the HSCT I am completely drug free. What excites me the most, I am positive that my general condition will continue to improve, I just feel it!
How long did it take you to recover enough to return to work/daily life post procedure?
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane
How long did it take you to recover enough to return to work/daily life post procedure?
With regards to strength, almost instantly-of course, bear in mind that I used to be a professional athlete, so I have a bit different mental code and condition.
But nevertheless, the procedure is generally very well tolerated, and Prof. Slavin insists on some sort of activity even in the hardest periods of the procedure. For example, try to stand on your feet as much as you can, when one’s immune system starts to show the slightest signs of recuperation post zero day, try to leave your chamber at least for 15 minutes and walk in the bone marrow department.
As for my let’s say complete contact with other individuals, I wore a mask for some 3-4months after the transplantation when being in small and traffic places, for example elevators.
You're probably not feeling too perky right about now but I just wanted to let you know there are many of us out here sending BIG TIME healing vibes your way!!! Hang in there....it'll get better...MUCH better!
Thanks so much for the healing wishes. It is Friday morning here in Heidelberg, Germany, day 0 +2 post transplantation. Bottom line, so far I experience the procedure as 'uncomfortable'. Nothing much more to it. The medical staff know what they are doing, they are extremely professional, and they leave nothing to chance. The modern HSCT protocol seems designed to mitigate most of the chemotherapy rough edges.
So, as yet no sever side effects, just fatigue. But a couple of weeks of discomfort is a price I am more than willing to pay for the more than 80% probability that my MS will be stopped in its tracks. I am not entertaining thoughts of the NY marathon. Any modest EDSS improvement would of course be a gift, but I am not counting on it.
I will keep you guys regularly updated. Final note, George Goss has provided in his blog a very accurate and comprehensive description of what one may expect from HSCT. His coaching, encouragement and presence at my bedside in Germany have made a huge difference.
Please keep us posted on your recovery/ how you are doing. I, along with some local businessen, am in the process of setting up a foundation now to help local folks with debilitating diseases. The board is attempting to raise money now for this treatment for me to get HSCT. I am hoping to do it through the trial in Chicago, but Germany is my backup. is your treatment the myeloablative or the lympho ablative? Do the folks in the hospital speak english? What do you think it will cost by the end, including living in Germany for a period of time?
Good luck.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane
Shucks, sounds like a great initiative. To keep a long story short, my treatment is an exact rerun of the one George recieved in Germany. Language is at times a challenge, but the Docs are all fluent. This is a best in class outfit . As to costs, George already addressed this in his blog and posts.
I was just wondering if the price went up in the year and a half since GG had it done. Please keep us posted on the recovery.
"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane
Shucks, the Germans are a unique kind of people. They are not famous for their sense of humor, but they are quality freeks. Once they set out do do something, if will never fall short of being best in class. Price and business transparency are also considered essential for the smooth running of this probably best performing 1st world economy. Bottom line, zero inflation, zero price increase.
I was just wondering if the price went up in the year and a half since GG had it done. Please keep us posted on the recovery.
Hi Shucks,
I had the good fortune to see Asher this past week in Heidelberg during his stem cell "burthday" infusion on Wednesday that (likely) marked his transition to being free of MS disease progression. (Asher is a remarkable man, nice gentelman and good & decent human being and I am hoping (expecting?) to see stopping of his disease and eventual improvement of his MS status!) I'm back in California now and later this weekend I'll upload the pictures on my blog and then send out a note for all to see. (It will also be an opportunity to share Asher's experience & future results of the treatment going forward.)
Regarding pricing. . . . . I also had an opportunity to sit down together with the manager of the International Office at Heidelberg University Hospital to discuss this specific subject. I'm still sorting through some residual issues and once I nail them down I will have some more detailed comments regarding this subject. (Its a rather complex procedure so the pricing can also be somewhat complicated.) Until then it's probably safe to say that 55,000 Euros is a good ballpark figure for cost. (Remember that I do not have any business or financial relationship of any kind with Heidelberg and only have the motivation to publish factual information for those MSers seeking treatment.)
